Accepting the Unacceptable

Wren accepts her increasingly crepe-y neck and her rheumatoid disease. She achieves peace of mind even as she applies moisturizer daily and injects Enbrel weekly. Acceptance isn't giving up or giving in.
Wren accepts her increasingly crepe-y neck and her rheumatoid disease. She achieves peace of mind even as she applies moisturizer daily and injects Enbrel weekly. Acceptance isn’t giving up or giving in. It’s more like choosing your fights.

“Acceptance” has become an almost dirty word, but it shouldn’t be. Some people have told me that if I “accept” my rheumatoid disease, I’m giving in to it. I’m giving up, not fighting, not trying to get better. These people don’t have much patience for me. I just smile, shrug my shoulders, and hope they never have to live with a disease like this one.

Read the rest of the story at RheumatoidArthritis.net.

Wrist Watch

I’ve just got to tell you! I’ve reached an significant milestone in my long battle with the rheuma-dragon: wearing wrist braces.

Wow! Earth-shaking, right? I know, I know. Pretty low on the excitement scale, isn’t it. But here’s the thing: I’ve tried using wrist braces in the past, and I’ve always ended up taking the miserable things off within a few hours. Purchased at a drugstore, in the smallest adult size available, they were nevertheless too big, heavy, clunky, and uncomfortable. Within a few minutes my aching wrist was aching even worse. What’s more, it wasn’t long before the stiff brace began chafing the skin around my thumb where it meets the palm, the top of my hand at the knuckles, and where the brace ended on my forearm. Finally, the

AN IMAK COMPRESSION GLOVE with an elastic support bandage helped with wrist pain, but wrapping and unwrapping was a PITA.
AN ISOTONER COMPRESSION GLOVE with a sticky elastic support bandage helped with wrist pain, but wrapping and unwrapping was a PITA.

rigid metal bar inside the brace, meant to prevent my wrist from bending too far, in fact merely impeded any attempt at normal movement.

It was all very frustrating.  Having some sort of wrist support when my wrists flared would have been a relief, but after trying a couple of different brands, I gave up. In the end, I just wrapped my hand and wrist firmly with an elastic support bandage. It was cumbersome and came undone easily, but it was better than nothing.

So you can imagine how intrigued I was when I ran across the Wellgate for WomenWellgate for Women PerfectFit Wrist Support PerfectFit Wrist Support on Amazon.com. The company claimed these braces were light and slim, made with the slender contours of a woman’s wrist in mind. Furthermore, the company claimed they were actually comfortable.

Unconvinced, I added them to my wish-list. They were a bit pricey–$18.99–and I needed two, since I never knew which wrist was going to act up. Having been burned on this type of product in the past, I wanted to think about it before I spent that much.

Months passed. And then a couple of weeks ago I was glancing through my Amazon Wish List again. My wrists have been giving me particular hell over the last couple of months, so I pulled up the info on the Wellgate braces again. They were still tempting, but …

… Oh … oh, wait!

The price had dropped considerably. I almost couldn’t afford not to get them! And they were rated four-and-a-half stars out of five, with more than 900 reviews.

So I took the risk and ordered braces for each hand. I figured if they didn’t work out I’d just send them back and get a refund.

I WEAR MY Wellgate for Women PerfectFit Wrist Support, Left Hand, with my Imak Compression Glove. I have a brace and glove for the right hand, as well.
I WEAR MY Wellgate for Women PerfectFit Wrist Support, Left Hand, with my Imak Compression Glove. I have a brace and glove for the right hand, as well.

Well, no way that’s gonna happen! You’d have to shoot me to get my new wrist braces away from me now. I mean, I. Love. These. Things! They’re everything Wellgate claims they are: soft and comfortable (made with memory foam), slim and form-fitting, plenty of support, lightweight, and they fit neatly beneath long sleeves. They don’t rub, cause hot spots, or chafe my skin. They’re also pretty decent-looking for something as dull and utilitarian as a body-part brace. The artist in me approves.

But best of all, these braces work. Wearing them lowers my pain levels. There’s a stiff support sewn into them, but it isn’t hard and obstrusive. It’s gentle. The braces are fully adjustable for tightness, too. The part around the thumb and palm fits close, with no gaps, and it feels good and secure. The only time I really notice I have them on is when I try to bend my wrist more than 10 degrees in any direction. They stop the movement gently but firmly, without raising my aggravation meter.

Finally, the materials they’re made of breathe. My skin got hot, damp, and sticky in no time when I wore the old braces. These don’t, though–and that’s even when I also wear my Imak or Isotoner gloves (for the extra compression and warmth). The Wellgates seem to be extremely well-made, too, with secure stitching and high-quality materials. I’ll let you know if they start falling apart, but honestly, I don’t expect them to. They’ll probably outlast me.

Wellgate didn’t ask me to promote this product, and I’m not getting any sort of payment or reward for doing so from them or anyone else. I just wanted to pass along this very good news about their very, very good wrist supports/braces to people who I know will really appreciate it. :)

Dreaming …

kandinsky-stgeorge-RheumaBlog“Fantasy is silver and scarlet, indigo and azure, obsidian veined with gold and lapis lazuli. Reality is plywood and plastic done up in mud brown and olive drab. Fantasy tastes of habaneros and honey, cinnamon and cloves, rare red meat and wines as sweet as summer. Reality is beans and tofu, and ashes at the end. Reality is the strip malls of Burbank, the smokestacks of Cleveland, a parking garage in Newark. Fantasy is the towers of Minas Tirith, the ancient stones of Gormenghast, the halls of Camelot. Fantasy flies on the wings of Icarus, reality on Southwest Airlines. Why do our dreams become so much smaller when they finally come true?”

–George R.R. Martin

Walking to Wellness


ED

A few years ago I visited my primary care physician for an annual check-up. She gave me a good going-over, studied my blood and urinalysis test results without commenting, and, as I sat there on the exam table, asked me some general questions along the lines of “How do you feel?”

I answered them easily. With the exception of my slowly increasing rheumatoid disease symptoms, I was feeling fine. I hadn’t had a cold in ages, I always got a flu shot, and I’d stopped smoking years before. This, I thought, was going well. She’d release me with a bill of good health any minute and I’d be on my way.

Not so fast. “Do you exercise?” she asked, fixing me with her steely, blue-eyed gaze.

Read more of my latest post at RheumatoidArthritis.net.

I Saw New York City

I really did. There it was, that iconic American city, turned into the real thing just by spending seven cramped hours squashed into an airliner with 200 other people. Now it was just a not-impossibly long, cold swim across the Hudson from where I stood. NYC shimmered in the westering sun, curiously weightless–even ethereal. And, like the old cliché, it was so close–and yet, so far away.

April 18, early evening
April 18, early evening

It was the evening of April 18, somewhere around 5:30 p.m. I’d spent the day inside a huge conference room at the Hyatt Regency Hotel, Jersey City, learning with about 60 other patient health bloggers/advocates how to do what we do better. The program was fantastic. The things I’d heard, seen, and learned were swirling in my head, a mix of images and ideas I had yet to separate and pin down.

And now, there was New York City. It was right there. There was a subway station and a train a short stroll away that could shwoosh me beneath the river and spit me out within a block or two of the World Trade Center. I’ve dreamed of going there for a long time to pay my respects at the 9/11 Memorial, and being realistic, I knew I’d probably never have another opportunity to do it. Sure, I still had a dinner with several of my fellow patient advocates to attend, but after that, I’d be free to board the train. In mere minutes I could be peering up at those incredible skyscrapers–including the newly finished Freedom Tower–from my own, 5’3″, wide blue-eyed perspective.

There was just one problem. I was so stiff, achy, and exhausted I didn’t know where I was going to find the energy to make it through dinner, let alone to wander NYC on foot afterward.

The fact was, my rheuma-dragon had sucked away most of my oomph. The old beast was making my hands and feet hot, swollen, and painful, and making the rest of my body feel like it had been stuffed loosely into a barrel with stones the size of fists and kicked rudely down a steep hill.

I decided to go to my room and lie down until dinner, hoping to recover a little bit of energy. And instead of ruling a trip across the Hudson into the city out, I decided I’d wait and see how I felt after the meal.

As you might have guessed, I didn’t go to NYC that night. My dragon had just taken too much out of me. But I wasn’t sad about it then, and I’m still not. I got to see that magnificent city with my own two eyes, even if it was from a distance.

And really, I got a much greater gift from the weekend than an hour inside a postcard from Manhattan: I got to meet dozens of truly remarkable, amazingly brave, resilient, selfless, loving and laughing people–and all of them fighting their own personal dragons, each of which is as big, as cruel, and as merciless as my own old rheuma-dragon.

I wasn’t the only one at the HealtheVoices15 conference who was in pain, ill, and exhausted that night–but who looked perfectly normal on the outside. I wasn’t the only one laughing and talking, exchanging anecdotes and email addresses even as I groaned inside. Every single person who attended the conference was a smiling warrior fighting a serious (and often devastating) disease, like metastatic breast cancer, ovarian cancer, and prostate cancer; leukemia, CLL, MM, and WM; HIV; hepatitis C; psoriasis and psoriatic arthritis; cardiovascular disease; IBD and Crohn’s disease; mental illnesses such as schizophrenia; multiple sclerosis; Type 1 and Type 2 diabetes; lupus; and like myself, rheumatoid disease.

It was overwhelming. Humbling. Inspiring. Seeing all these people–men and women just like me–who were not only living well with their diseases but making it their business to reach out and help others like them gave me such incredible hope for the future.

This is human kindness, love, and resilience in action. And the sponsors of the HealtheVoices15 conference (Janssen Biotech and Everyday Health) brought us all together to help us learn new (and in some cases, better) ways to reach out to others like us to offer our support, encouragement, love, and care. We learned how to protect ourselves against compassion fatigue, how to measure our success online, about how to make the best of our online resources, and how to stay on the right side of the law while blogging, tweeting, and otherwise writing for the public, and we learned about how we might turn our patient advocacy into a full-time career, if we wanted to do that.

But the best part of the conference was still the people who attended it. The biggest eye-opener, for me, was that we all shared the same feelings about our diseases and how they affect us. We’d all felt alone and isolated from the rest of the world. We’d all felt misunderstood and often minimized by society–and even the healthcare industry we depend on to treat our disease. Almost all of us had begun our journeys into health/patient advocacy because we wanted information about our diseases that our doctors couldn’t–or wouldn’t–share with us, so we started looking for it on our own, on the Internet. And we all wanted to find others like us. Once we’d found them, we were hooked.

It’s taken me several days to wrap my mind around what I learned during the HealtheVoices15 conference. It’s taken that long just to recover from the travel, renew my energy, and get my rheuma pain back down to manageable levels. But it was worth it, all of it, for the huge gift of meeting my peers and making so many new friends.

I’m just babbling, now, so I’ll bring this post to a close. First, though, a little housekeeping:

1) Jannsen paid for my travel expenses for HealtheVoices15, but of course all the thoughts and opinions I’ve expressed here are entirely my own.

2) As you’ve probably noticed, I’ve changed RheumaBlog’s design to better fit a variety of devices. (Update: I’m still working on the site, so don’t be surprised if further changes occur without notice. It’s just me.)  ;)   You can read it much more easily now on your tablet or cellphone, if that’s how you roll. If you’d like to see my blogroll, more about me, my twitter feed, and archives, scroll to the bottom of the page and click the little triangular button.

Wren Flies East for the Weekend

NYCfromVuCafeHyattJC
My photo of the New York City afternoon skyline on Friday, April 17, taken from the Hyatt Regency Hotel, Jersey City on the Hudson. Ahem. NYC!!!

OK I’m not a bird, but I share that wee, brown, feisty-tailed featherfluff’s name. I might have had a feisty tail [wink] once upon a time, but today “feisty” fits my general attitude better. And while I don’t have wings, I still flew all the way from California to Jersey City, NJ yesterday. As I write this, I’m at the Hyatt Regency Jersey City on the Hudson, just back to my room after cocktails, schmooze-time, and dinner with 60-something other patient bloggers/advocates. It was a great start to the HealtheVoices15 event, put on by Jannsen and Everyday Health, and it continues tomorrow.

With RheumaBlog, I write about living well with rheumatoid disease, hoping to reach out to others, like you, who share it with me. Blogging allows me to share what I’ve learned about RD (and what I’m still learning!). It gives me a way to offer my support, comfort, and encouragement, and to let others who have this disease know that they are not alone and that I understand their pain, frustration, and fears absolutely. And blogging lets me build cameraderie and lasting friendships with everyone who stops by RheumaBlog to read. Writing it has been, and continues to be, one of the most transformational, hopeful, inspiring, and just plain fun things I’ve ever done. I’ve met so many incredible people!

My companions at HealtheVoices15 this weekend are patient advocates representing a large number of other diseases, including breast cancer, psoriasis, psoriatic arthritis, diabetes, prostate cancer, HIV/AIDs, Crohn’s disease, Hepatitis C, and more. Each one of

My rheum-mates Angela Lundberg (Inflamed: Living with Rheumatoid Arthritis), Britt Johnson Hurt Blogger), and Leslie Rott (Getting Closer to Myself) joined me in the Vu Cafe this afternoon! Laughter ensued.
My rheum-mates Angela Lundberg (Inflamed: Living with Rheumatoid Arthritis), Britt Johnson (Hurt Blogger), and Leslie Rott (Getting Closer to Myself) joined me in the Vu Cafe this afternoon! Laughter ensued.

them reaches out to others with the same need to communicate, to tell their stories, to help others not to feel alone, and to offer their support and encouragement. Sitting there tonight, sharing a meal with so many amazing, selfless, inspiring, and just plain nice people was an honor I won’t ever forget.

Jannsen and Everyday Health gathered us here to help us learn how to be even better patient advocates through the use of social media. I’m just a barely fledged Twitter tweeter, so I can stand to learn how to do it more effectively. And there are so many other forms of social media out there. It’s like having the world open up before my feet. I feel so honored, and humbled, to be chosen to participate in this historic (it really is!) event.

I’m feeling very accomplished. And very, very tired. So, although I’m not going to write much more tonight, please stay tuned. My typing feathers are preened and primed, and there’s more to come.

NOTE: Jannsen paid for my travel expenses for HealtheVoices15. All thoughts and opinions expressed here are my own.